To Older Siblings Everywhere

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Do you ever think about your childhood and what your life was like then? I am decades away from living in the pink house, across the street from an elementary school, where I spent seven of my childhood years (from age 3 to 10).

I think about that time, with a chicken coop out back full of hens and a rooster or two; the garden that provided us with almost all of our vegetables and enough cucumbers, green beans, cauliflower, and carrots for many dinners and pickling. There were the apple trees, plum tree, and apricot trees, and a patch of strawberries and rhubarb. I’ll never forget picking tomatoes out of the garden and biting into them as the juice made a path across my dirt covered face.

It isn’t the fresh food I remember most, though or the smell of lilacs that wafted through the yard in spring. What I remember most is life with my three older brothers. I remember the times I was allowed to play with them or tag along with them, and the times I was told, no and was left behind.

Today, my oldest brother, Joel, turns sixty and it is his birthday that has me wandering back to the house where we all lived together under one roof. A house where the walls and floors and paint and furniture held our laughter, our secrets, our dreams, and our tears. At times blood tied us together, and at times life, anger and choices tore us apart.

My brother Joel had a pet mouse, a pet rat, pet snakes, played baseball as a catcher, and kept more than a dozen Reese’s Peanut Butter Cups in the freezer and instructed his younger siblings not to touch that chocolate.

I looked up to my oldest brother, and I listened to him. Listening to Joel was a problem, though because he liked to tell stories. Stories weren’t for lying, although he occasionally received a spanking for that, his stories were made up to entertain himself and anyone else who would listen. I was always a willing audience.

Joel once sent me to school with a bottle of mouthwash (I didn’t know what it was) and told me to drink it for superpowers like running faster or jump roping longer. He told me it was “White Lightning,” a magic potion. You can imagine how well my bottle of white lightning went over with my teachers in elementary school.

At school for show-and-tell, we were instructed to bring things from home that started with the letter, B. Joel went through our whole house and collected everything from baseballs, books, batteries, brushes, etc. and sent me to school with bags full of things that started with a B. I brought at least ten times the number of items of any other kid.

Another time for show-and-tell, Joel sent me to school with a record by Shel Silverstein. He wanted me to share the song, “Sarah, Cynthia, Silvia Stout.” It is a song about a girl who will not take the garbage out. The song is very funny, and my class loved it and wanted to hear the other songs on the record. Well, some of the other songs, contain adult language and themes and once again, I upset the elementary school teachers.

Having older siblings almost ensures that you will know things teachers don’t think are age appropriate. That means getting in trouble for being “ahead of the class” in things like anatomy and sex.

When our time in the pink house came to an end, and my parents went different ways, my brother Joel stepped in and took care of all of us in ways he was too young to do. At night before bed, he would drive my brother, Andrew, and I out to the neighboring town so we could see our mom at her waitressing job and she could kiss us before he took us home and put us to bed.

There are a thousand other memories; feelings, images, familiar smells, favorite foods, least favorite foods that bring back the time we shared under one roof. Good times and bad times. Happy times and hard times. But in the end, there is nothing quite like having an older brother.

Halloween and Schizophrenia From Stereotypes and Stigma to Candy

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I love October it is the first month after summer where days start to get cooler, nights longer and there are all of those great flavors like pumpkin, cinnamon, nutmeg, and maple. As a kid, October held one of my favorite days at the end of the month, Halloween. But that was long before I had the diagnosis of schizophrenia.

Now Halloween marks the most stigmatizing and stereotyping day of the year for people with a severe mental illness. There are straightjacket costumes, the horror films, the haunted asylums, and many other cultural favorites that make it look like those of us with a mental illness are terrifying, monstrous, and the places we go for treatment are houses of horror.

People have become more and more aware of how costumes, mascots, names, etc. are offensive to certain groups over the years. Look at the campaigns to get the Red Skins to change their name, and the pushback on Hollywood to hire transgender actors to play transgender roles as well as Asian actors and other POC to play roles intended for them. All good, every bit of it.

Many groups have experienced a tide of change about their identities, but that wave has not included severe mental illness. There has been a great deal of public acceptance of anxiety and depression, those two disorders have made it into the mainstream in ways schizophrenia has not. I have seen little shift in public awareness or acceptance of schizophrenia, especially in October.

There is hope, though with movies like Netflix’s Maniac, where the main character has schizophrenia and displays many symptoms, but isn’t a monster, a criminal, or even unlikeable. That is a huge change from the stereotypes on many crime shows that write in the killer as someone with schizophrenia.

The history of psychiatric facilities as places that tortured patients with treatments like lobotomies, ice baths, insulin shock therapy, and other stuff of nightmares, almost cements psychiatric facilities with a role on Halloween. The boarded up closed up, and long unused asylums that dot our countryside don’t help as many people and television shows report tales of ghosts and other haunting stories.

I don’t hate Halloween, though. On the bright side, at least it is a night that involves candy, and who doesn’t want to celebrate pillowcases, and plastic pumpkins packed full of sugary treats, especially candy bars that are full-size.

 

 

Giveaway: Journal/Workbook

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I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.

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“…talking Away. I Don’t Know What I’m to say. I’ll say it Anyway” Lyrics from a-ha

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I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.

Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.

Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.

These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.

Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.

It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.

Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.

So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.

In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.

But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.

I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.

If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.

If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.

Forgetting Your Mental Health Might be the Best Thing for your Mental Health

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For the past few years, I have considered myself an advocate for the mentally ill. My advocacy corresponds with my coming out publically with my diagnosis after almost two decades of hiding it.

The problem with focusing on advocacy, writing dozens of articles, writing a blog, and doing many interviews about life with schizophrenia is that having a severe mental illness became my primary identity. Meaning, I focused a good deal of my time on having a brain disease.

I have written over and over again about how I am a wife, daughter, sister, friend, cousin, niece, aunt, writer, etc. and that I have many identities that have nothing to do with having schizophrenia. Although I wrote those words over and over again and said them in interviews just as many times, I wasn’t living that way. I was spending the majority of my time on things that were directly related to my illness.

I have seen many people (way too many to count) who receive a mental health diagnosis become advocates. It seems to be a way to try and make something positive out of something challenging, devastating, difficult, hard, and even at times, humiliating (because of stigma and stereotypes). I think advocacy is fantastic and I am glad that both family members and those with a brain disease are active in this work, but focusing on one aspect of your life especially one that can be as difficult as a severe mental illness is not good for mental health!

Doesn’t that last sentence sound ironic? Focusing too heavily on your mental health or diagnosis is not good for your health. For that reason, I am starting a blog (I’m keeping this one, too) that has nothing to do with the world of mental health (I hope to monetize that blog and make it a small business), and I am going to work part-time outside of the home in a job that is customer focused.

I don’t intend to give up my work as an advocate; I simply plan to start living a more full and varied life. At first I plan to work up to not thinking about schizophrenia for a few hours, and hopefully, after time, whole days will slip by where I don’t think about the world of psychiatry, mental health, stereotypes, stigma, or the world that consists under the branch of mental health.

Because let’s be real, what can be healthier than living such a great life that you forget you have a disease? Ignoring your mental health can be the best thing you do for your mental health. Riddle me this Batman.

Netflix’s Maniac From the Perspective of a Person with Schizophrenia

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I spent the weekend binge-watching and reading articles written about the new Netflix series Maniac. From Slate to Rolling Stone, none of the writers for the magazines loved it as much as I did and not one of them gave enough attention to, what to me, was the most important, groundbreaking, enduring, and thrilling part of the whole show. The gem I am referring to is, there was a character who has paranoid schizophrenia (like me) and wasn’t a cookie cutter stereotype like almost every other character written into a movie or television show where the writers try to explore one of the most stigmatized and baffling of the mental illnesses.

As someone who has lived with paranoid schizophrenia for over two decades, I wouldn’t say I am an expert, but I do know a thing or two about the disorder that writers usually get wrong, mess up, or rely heavily on worn-out stereotypes like the mass murderer, the genius or the lovable clown.

One of the main characters (Owen) is sensitive, frightened, unsure, intelligent, heroic, courageous and has a sense of integrity and insight into his illness. I have never been more excited or pleased to see schizophrenia on the screen as I was this weekend.

Don’t get me wrong; the writers don’t ignore some of the more troubling symptoms of schizophrenia for example hallucinations, delusions, conspiracies, seeing patterns in random events, and the desire not to take medication. All those details are there, but so is a likable and complex character that people can imagine wanting to get to know it real life.

The show also deals with addiction, borderline personality disorder, loss, grief, and complicated relationships as well as a wide range of emotions. I found it to be a playground of delight for those of us who for whatever reason, through necessity or curiosity, love psychology, therapy and the world of the mind. The scenes are graphic (two are reminiscent of Pulp Fiction) and many are colorful, fantastic and a treat for the eyes.

Maniac is easily my favorite show this year, and it ranks as my all time favorite show that deals in any way with schizophrenia and it may become one of the few shows that I watch multiple times and put on my list of best I’ve seen.

 

A Guided Mental Illness Journal & Workbook: Build Confidence and Coping Skills

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Here is the cover of my new guided journal/workbook. It contains writing prompts, tasks, and exercises to think more creatively, increase motivation, learn new skills and basically help you think past the symptoms of mental illness. I will be donating 10% of my royalties to Third Avenue Charitable Organization (TACO) to help with the work they do with the homeless and low income in my community. Many of the people they serve have a mental illness. The workbook is available on Amazon.

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An Exploration of Life, Death, and Being Rich

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At night before I go to sleep, I pray/meditate. I frequently imagine myself at the edge of the ocean, looking up at the magnificent star-filled sky, thinking of the expanse, marveling at the creation, wondering about the Creator. I imagine myself sitting in the sand, lighting a candle for every person I know who needs support, care, healing, a boost to their finances, or is battling one problem or another. I can sometimes light these candle for fifteen to twenty minutes. I don’t leave out my enemies because I hope that the fact that they are trouble in my life will have a resolution and they will no longer fall into that category. This quiet time in my day, just before sleep, is when I think of others, make my requests known, and try to figure out what it means to have a relationship with God.

Two nights ago, after lighting the candles for my family, my friends, and my adversaries, my thoughts roamed to the leaders of this country and the idea of rich people. What do rich people, I mean really rich people have that I don’t have? Mostly they have access to people and places that I would not be allowed entry or access. They might meet the CEOs of companies or dine with a celebrity. But on the other hand, I can read the same books they do. I can watch the same movies they watch (theirs might be viewed in a home theater or at a private screening and mine might be experienced in a worn out robe, on my couch, on Netflix), but I can enjoy many of the same things the rich do.

And do you know where this thought process, imagining, trying to discover my place in the universe and my relationship to humanity and the creator led me? I see the same sky that rich people do. I watch the same sunrise and sunset that they do. I can smell jasmine while walking down my street. I can walk on a beach and dip my feet in the ocean. I can climb a hill or hike up a mountain. I can swim in a lake. I can enjoy good food and a great cup of coffee. Money, if you have it or if you don’t, that doesn’t prevent you from experiencing many of the mysteries and pleasures of creation.

And the greatest of all equalizers is that there is nothing that insulates the rich from death. We are all going to die, and that evens the playing field. The homeless have to walk the path, I have to walk the path, middle-class people have to walk the path, and the super rich have to walk the path. We will all find ourselves far from the sunrise of our lives and deep into the evening where death is a reality and something we can’t avoid. It may sound morbid to think so much about this, but it ties me to humanity. It is one of our most profound and significant threads that weaves our lives together. We are connected whether or not everyone wants to see it, or admit it.

So many people are using their money to stop the aging process, to get the best medical care, to eat the healthiest food, to hire trainers, and yoga masters, etc. It all boils down to the same things, in the end, none of us can outrun it, none of us can pay our way through it. I don’t find this terrifying, I find it liberating, and I feel like I have a connection to everyone. It is beyond belief the way we try to separate ourselves from one another, to mark and point out our differences only to discover that the largest things in our life are something we all share.

We will all close our eyes for a final time. I’m not on a race for my day, believe me. But it amazes me that over seven billion people alive today will have to come to terms with it in one way or another, it is inescapable, it is profound, it is us, it is human, it is our journey, it is life, and like birth, everyone must experience it, ready or not.

Unwind My Mind

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My mind is like Twizzler candy, all in a twist. Two weeks ago, I finally got up the courage to make a doctor’s appointment and have two spots that people keep telling me to see a doctor about checked. One, I have had for twenty years (I got it checked once ten years ago, and the other, has been growing on the side of my face for six months to a year).

At the dermatologist, I whooped and squealed when they said, the spot on the side of my face is a barnacle and is benign. I got up the courage to show the doctor the other, older, more ominous spot on my shoulder and she said, “Oh, that! Of course, people are concerned about it because they see a pocket of blood, but it is just a grouping of broken blood vessels. You will probably see more of them on your body as you age.”

For the first time in over two years, I don’t have a major medical concern that might be cancer, lead to surgery, or need medication for treatment. Right now, I am relatively free from serious medical concerns except schizophrenia. That hasn’t helped my mind, though. My mind is still in, “I’m probably going to need serious treatment, and I might die mode.” Considering chemo, radiation and two different types of surgery for over two years has caused a type of catastrophic thinking in my brain that is now automatic.

I am a big believer in trying to rewire the brain to break destructive habits and create a more positive, happy, productive existence. Not only does it take time and effort to break negative thinking patterns, but it also takes some calm, some peace, and some distance from the crisis. I just started to get that distance on Tuesday (four short days ago).

When I look in the mirror, I still catch myself avoiding looking at the left side of my face to keep from seeing the round patch of discolored skin there, because I tried so long to trick myself that if I didn’t see it, it wasn’t there and couldn’t be cancer. I also catch myself avoiding drying my breasts with a towel after a shower because I don’t want to accidentally feel the 14 cm (or one of the smaller) masses that have lodged there, thus reminding me of the tests I still need or that I am waiting for results.

Most of us with schizophrenia know the statistics. On average our lives are twenty years shorter than the national average. I am keenly aware that I am in my fifties and will be celebrating another birthday in three short weeks. I am a few short years away from the bleak statistic.

Nevertheless, I want to go from crisis mode, from catastrophic thinking to believe I will live until I am at least eighty. So, every morning I tell myself, “It is possible for me to live until I am eighty.” I know this seems almost childlike in its simplicity, but it is helping untwist my very tired and traumatized mind. Thinking that you might have to deal with life-threatening medical problems for two years straight is exhausting. I believe it changes the way the brain functions and it has a huge impact on our future outlook.

I told my husband the other day; I am tired, so deeply tired. This should be of no surprise to me or anyone else. I don’t need physical rest; I need emotional rest. I need not think that death is looming or surgery, chemo, radiation, etc. are right around the corner. My mind has been like a warrior preparing me for the worst for over twenty-four months.

I have so many friends who have faced these things and received worse news than me and had to go through these treatments. I am not trying to compare my negative diagnoses to their more difficult positive ones. I am not trying to insinuate that my experience is more difficult or even on par with theirs, I am not. I am only saying that my brain has now been trained to be in crisis mode, in preparation for the worst mode, in bad news and worst-case scenario mode, and I can see and feel the consequences of that.

Now, it is time to retrain my brain and like I started out this blog piece saying, my mind is twisted. I keep telling myself positive things and keep catching myself doing frightened, scared, nervous, uncertain things.

I went with my husband to the doctor to get a bump on his back checked out, and I told the doctor, “I’m sorry, I have schizophrenia, I worry about everything.” The doctor said, “That has nothing to do with schizophrenia, I worry about everything, too.”  I believe that, and that’s why I’m sharing with you.

Truth

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My husband and I are planning a vacation. We are going to a beach town on the Sea of Cortez in Mexico. If you look up the Sea of Cortez, you will discover it is rich in marine life; there are good places for hiking, bird watching, fishing, snorkeling, great conditions for boating or kayaking, and of course miles of beaches to walk. Not all of you, but many of you would enjoy a vacation like the one we are planning. A bonus is that compared to the same type of vacation in many countries, Mexico is relatively inexpensive. Sounds fantastic, doesn’t it?

Why then am I so overwhelmed with anxiety? That is the thing about having my particular brain disease or mental illness, or however, you choose to describe it. Nothing is easy. For most people, planning a vacation is fun, exciting, and the trip is either relaxing, educational, cultural, or a combination of many things (like a foodie trip or environmental tourism). For me, the thought of leaving my routine and being far from my doctors, and from my pharmacy cause me tremendous amounts of stress.

When I was a teenager, I traveled to New York, London, Rio De Janeiro, Cairo, and many other countries and cities by myself. I wasn’t anxious. I wasn’t afraid. I was up for anything although my first love was clothes shopping (I loved buying clothes that no one I knew at home was going to have or be able to get. Being original was very important to me). The fact is even well into my thirties; I could travel by myself without fear or anxiety.

If it were just travel that made my life more difficult than many people, I wouldn’t think that was too big of an inconvenience because we only travel about five times a year give or take a couple of times. But everything with schizophrenia is harder. It is harder to write; it is harder to go to a party, it is harder to go to the doctor (my pulse soars to 150 or above every time I enter any kind of doctor’s office).

I don’t feel sorry for myself, but when I am honest, the truth is, I am a little more tired than most people I know. When daily living takes so much effort, it can be exhausting. I know that I am more fortunate than millions of people, I practice thanksgiving and gratitude every single day, but to act as if my life is perfect all of the time and that schizophrenia isn’t a significant life challenge that would be a lie.

I have preached, written about, and tried for years to get everyone to see me as a whole person, a person with many identities, roles, relationships, skills, and talents. If somewhere in all that convincing I ever made people believe that schizophrenia is a small part of who I am and doesn’t impact me in every corner and crevice of my life, I have misled you.

Schizophrenia is the dog, and I am the leash. I have some control over where it goes, and what it can do but as a powerful animal, it can always break free if I’m not careful and maybe even if I am. It’s a beast and a burden, and you have to walk it, care for it, and pay attention to it twenty-four hours a day because unlike a dog, it doesn’t sleep.